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Original research
Top 10 research priorities for people living with pulmonary fibrosis, their caregivers, healthcare professionals and researchers
  1. Gabriella Tikellis1,2,3,
  2. Allison Tong4,
  3. Joanna Y T Lee1,
  4. Tamera J. Corte3,4,5,6,
  5. Alison J Hey-Cunningham3,4,
  6. Michael Bartlett7,
  7. Tonia Crawford7,
  8. Ian Glaspole1,3,8,
  9. John Price9,
  10. Jamie Maloney7,
  11. Anne E Holland1,3,10
  1. 1Department of Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Victoria, Australia
  2. 2Department of Physiotherapy, La Trobe University, Melbourne, Victoria, Australia
  3. 3National Health and Medical Research Council Centre of Research Excellence in Pulmonary Fibrosis, The University of Sydney, Sydney, New South Wales, Australia
  4. 4Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  5. 5Department of Respiratory Medicine, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
  6. 6School of Medicine (Central Clinical School), The University of Sydney, Sydney, New South Wales, Australia
  7. 7Lung Foundation Australia, Milton, Queensland, Australia
  8. 8Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, Victoria, Australia
  9. 9Institute of Respiratory Health, Perth, Western Australia, Australia
  10. 10Department of Physiotherapy, Alfred Health, Melbourne, Victoria, Australia
  1. Correspondence to Dr Anne E Holland, Department of Physiotherapy, Alfred Health, Melbourne, VIC 3004, Australia; A.Holland{at}alfred.org.au

Abstract

Introduction People with pulmonary fibrosis (PF) experience a high symptom burden, reduced quality of life and a shortened lifespan. Treatment options are limited and little is known about what patients, caregivers and healthcare professionals (HCPs)/researchers consider as the most important research priorities. This study aimed to identify the top 10 research priorities for PF across all stakeholders.

Methods Participants included people with PF, caregivers and HCPs/researchers involved with PF. The research priority setting exercise involved three stages: (1) identifying priorities using an open-ended questionnaire and thematic analysis, (2) development of specific research questions at a face-to-face workshop, and (3) online ranking of research questions to identify the top 10 research priorities using nominal group ranking method.

Results 196 participants completed stage 1 generating 560 questions and 14 research themes were identified. Stage 2 involved 32 participants and generated 53 indicative questions from which 39 were used for the final ranking. Stage 3 was completed by 270 participants. The top ranked priorities focussed on medications to reverse scarring in the lungs (ranked 1st), improving lung function (ranked 2nd, 6th and 8th), interventions aimed at alleviating symptoms (ranked 5th and 7th), prevention of PF (ranked 3rd and 4th) and the best exercise programme for PF (ranked 10th). There was good consensus among patients/carers and HCPs/researchers on the top 10 priorities, however, causes of acute exacerbations and early diagnosis for improving survival, was ranked higher by HCPs/researchers.

Conclusion Interventions for preserving lung health and alleviation of symptom burden were top research priorities for PF stakeholders.

  • idiopathic pulmonary fibrosis
  • interstitial fibrosis
  • rare lung diseases
  • psychology
  • exercise

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Footnotes

  • Twitter @allisontong1

  • Contributors Conceptualisation: GT, AT, AEH, TJC. Data curation: GT, AT, JYTL, AEH. Formal analysis: GT, AEH, AT. Methodology: GT, AEH, AT. Writing—original draft: GT, AEH. Writing—review and editing: GT, AT, JYTL, TJC, AJHC, MB, TC, ING, JP, JM, AEH.

  • Funding This work was funded by the NHMRC Centre of Research Excellence in Pulmonary Fibrosis (GNT1116371) and supported by the Australian IPF Registry, Lung Foundation Australia and industry partners including Boehringer Ingelheim, Roche and Galapagos.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study protocol was approved by the La Trobe Human Ethics Committee (#HEC19215) and the Sydney Local Health District Human Ethics Committee (2019/ETH111649).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data sharing not applicable as no data sets generated and/or analysed for this study. Data is qualitative rather than quantitative and its use has been approved for this study only.

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